Tag Archives: grief

Breaking Chain

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This is an edited transcript of a conversation I had with Cheyne McClung, three days ago. The views and feelings expressed are Cheyne’s and he has given me permission to publish his words and photo.

The diagnosis of MND (Motor Neuron Disease). Was a death sentence. It snuck up on me. It took away things. Previously taken for granted. My ability to walk. My ability to work. Can’t hold my baby. Can’t breathe. Need BiPAP. 24/7. Hard to talk.

What did I do. To deserve this? Everyone said, “Nothing.” “It’s bad luck.” I know it’s. Not my fault. But I didn’t expect. Cruel and unusual. Punishment. MND has taken. So much. The worst is. I can’t go home. That’s where I. Want to be.

They ask me. About treatments. What if I get? Infections. What do I want? I want to live. As long as possible. To be with my. Little girl. She needs special care. Birth injury. I’m missing out. On too much. Her smiles. Trying to crawl. Chances to connect. Running out.

They decided. I can’t go home. Need too much care. They decided I need. Care facility. Hope it is. Close to home. They haven’t found one. It’s been weeks. No-one wants me. My case too. Complicated. I know that. People can do BiPAP. Without healthcare training.

They discriminate against me. I’m 37. MND doesn’t care. How old I am. Would they take me? If I was 65? Don’t get it. Care needs the same. Regardless of age. I’m paralysed. Can only move. My neck a bit. No place wants me. Hospices admitted me. For three weeks. Only. Then what? Give me hope. Then take it away. The uncertainty. Is too much. No one wants me. I’m trapped in. Too hard basket. Solitary confinement. In body shell.

Need escape plans. I don’t want to. Die. But if no. Quality of life. Then better off. Dead. I could stop eating. Not treat infections. My lung specialist. Said he could. Make me comfortable. Then stop BiPAP. All over. All done. Gone. Not yet. Only if. No quality of life.

Will anyone listen? Does anyone care? “Please. I just want. To spend time. With my baby girl. Closer to home. Can anyone help me? Please. Don’t make me beg.”

Palace of Care – No Surprises

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Photo by uzumaki anam on Unsplash

When I first met him he was still trying to be as independent as possible. He could’ve rung the bell and asked for water but instead, he walked to the family kitchen area to get the water himself. He refused to use the walker deigning to use only a simple cane. It took him 20 minutes to walk outside for cigarettes but the nicotine and his willpower continued to push him along. This was despite severe pain which was worsened by movement. He was determined to do things his way, the way he had always done things. Why should he change just because he had a terminal illness? He knew he was unwell and time might be short, he wanted to continue fighting as long as he could. He knew he might die but he would try his best not to. He was more worried about his partner. He had been trying to persuade her to see the counsellors but she was reluctant and wanted to concentrate on work. He was worried that she wasn’t aware of how unwell he was. He was still trying to look after her and wanted to prepare her for all possible outcomes, even the ones where he wasn’t around.

When I next reviewed him, two days later, he looked terrible. His pain had worsened, he had developed a bad headache, he was having fevers and couldn’t catch his breath. I was worried about him and I wasn’t sure if he would recover from this major deterioration. There seemed to be too much going on at once. Everything pointed towards worsened progressive disease. I talked about my concerns and that I would treat all of his symptoms aggressively. I told him that I would try my best to reverse things as much as possible but no matter what happened I would aim to make him comfortable. I offered to talk to his partner and I needed her to come in.

When she arrived I talked about what had led to his admission into hospice and updated her on his worsening situation. “Things keep on changing, the illness continues to worsen. I will try to reverse what is going on but I am worried that things might not improve. If things continue to deteriorate there might only be days to weeks left for him to live. We always work on a no surprises policy here.” He reached out his hands as he looked into her eyes and said, “I’m sorry love.” They hugged each other and the tears flowed.

I was asked back later when their closest family members came in. I met each of their siblings and their siblings-in-law. Their core support team throughout his whole illness. I shared the bad news with all six of them together. They asked about the rest of the family, some of whom were overseas. They asked, “Should we get them to come back as soon as possible?” I replied, “I’d rather people come and see you too early rather than too late. Working in hospice I see too late far too often.” They said they would make some calls.

I think therefore I am? – Natural Order

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Photo by Tolga Ulkan on Unsplash

Her first experience of the hospice was when she came to visit a younger family member. Someone important enough to travel over 1000km to see, despite her poor health. Her life had become a struggle over the last three years. Her lung failure had caused heart failure. Shortness of breath made even walking difficult. Leg swelling caused leg heaviness which made walking torturous at times. Over the years she had collected health problems but managed to continue with her life. Her relative had only been unwell once, and the illness was taking her life away. A sad time for the entire family, especially the elders. It is against the natural order of life for a child to die before a parent, but when you are elderly already it must be so much worse.

Palace of Care – Somewhere Under The Rainbow

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Photo by Harry Quan on Unsplash

She looked familiar but I couldn’t place her. Her dress was made of fabric which included all the colours of the rainbow. She said she wanted to tell us all a story and that she would try not to cry.

My husband knew he was dying, we both did. He was trying to decide which song to have played at his funeral. Somewhere over the rainbow came to mind but he couldn’t decide. Some time later when he was admitted to hospice the topic of song choice came up again. It was a sunny day and the light through the skylight shone through some crystals which were hanging from the ceiling. Projected onto the wall of my husband’s room was a rainbow. This confirmed the song choice as the right one.

Some months after his death, I missed him terribly and I would still talk to him as if he was still there. One afternoon I felt particularly low and I begged him to show me a sign that he was still there with me. The next day my neighbour showed me a photo she had taken the day before. It was a photo of our house, and above the house was a rainbow. Since then I have printed out and framed a copy of the photo and have hung it up on our living room wall. Whenever I need to talk to my husband I talk to the photo of the rainbow.

I think therefore I am? – Mother’s Day

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Photo by guille pozzi on Unsplash

Happy Mother’s Day to all mothers out there. A day when we celebrate one who may be one of the most important people in our world. This can be a happy occasion but it can also bring sad memories to those who no longer have a mother. A time when the grief is stirred up a bit more than usual. Memories of the loss of a parent churn from deep inside us. For some, the loss is all too recent, all too raw. You didn’t want her to suffer one minute more but you missed her even before she had died.

She wasn’t her usual self any more. She couldn’t be there as she always had been countless times before. It was hard to see someone so strong become so frail. She had always been of slim build but the weight loss was too difficult to bear witness to. Her severe fatigue made you wish you could gift her some of your energy, but you knew she would never take it. She had trouble being the one who needed care.

She always served her customers well. Put them at ease with her gentle words and friendly smile. She enjoyed seeing the children grow up, just like her children had. From needing everything done to full independence. They had all become adults and parents themselves but she couldn’t help still wanting to take care of them. Nothing changed at the end of her life, she took care of her children and her grandchildren. She wanted to do her best for them, as she always had.

Even after I am gone.
I will still be with you.
A tiny bit of me will live on.
Inside of you my child.
Know that you are loved.

Palace of Care – It’s Not Fair

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Photo by Nuno Alberto on Unsplash

Awww Dad it’s not fair.

What son?

Nanny.

That Nanny died?

No.

What’s not fair?

The doctors.

The doctors?

The doctors. They spended more time with Nanny than I did.

Spent more time.

She stayed with them for ages at that hospice place. We had to go home every night.

You liked it there, your cousins were there too.

Yeah but they made Nanny tired, she kept on sleeping. She didn’t play with us like she used to.

You guys always had a good time with Nanny, eh?

Yeah, I miss playing with Nanny. Can she come home with us?

Yeah buddy, for a couple of days, so we can say goodbye properly.

Yay, Nanny’s coming to stay.

Palace of Care – Mystery to Solve

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Photo by Hansjörg Keller on Unsplash

I was in my office and I heard the sound of people crying including children. I wasn’t sure which direction it came from, was it in front of me or behind me? The young mother or the older mother? Or was it the grandmother? Three ladies who were all dying in our hospice, had all outlived their prognoses. Prognostication is our best attempt at an educated guess, we are often wrong. That was the case with our three ladies, they were holding on, doing things in their own time. Who had just died?

Listening more closely, there seemed to be many different cries. This ruled out the grandmother who did not have a large family. The other two families were larger. Was it the mother of two or the mother of five? Both patients and their families had spent the last months in and out of our hospice inpatient unit. Both families had initially resisted coming into hospice due to fear of the unknown. After spending weeks with us both families had also been nervous and reluctant about taking their loved one home. They had become scared of leaving a place where they felt safe. Both ladies had successfully made it back home and had spent long periods at home.

When each lady returned it had been in similar circumstances, a deterioration in overall condition, with confusion and agitation prominent. Husbands were stressed out, as they had to take over the running of their homes. Their wives had previously run their households, now the husbands had to take over and they found the job to be harder than going to work. So much to do in so little time, dropping off the kids at their schools and picking them up afterwards. Household chores wouldn’t take care of themselves. They wanted to give it a go before evaluating the need for home support.

I was still unsure, I would have to venture out of my office to get more information.

Palace of Care – Intertwined

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Photo by Dan Meyers on Unsplash

I went to visit a famous man in his home. He was well-known locally and internationally. He had achieved great things throughout his life. The last few years were difficult for him due to several illnesses. One bad thing added to another, added to another. A painful condition had developed at the site of a previous radiation treatment. It caused nerve irritation resulting in electricity-like surges of pain even at rest. If you’ve ever knocked your funny bone you’d understand the feeling of nerve pain, but this was much worse. The pain relief he was on didn’t work, and he didn’t want to try anything else. He hadn’t slept for most of the week. His wife hadn’t slept either as she was trying her best to look after him. The hospice nurse had talked to them about admission, but he was reluctant.

I joined the nurse on the home visit, and we were welcomed in by his wife. We went inside and there was a huge pet cat inside, the size of a medium-sized dog. I noted the chairlift as we went upstairs to his bedroom. He had been stuck in bed for weeks as his legs had become weak due to nerve issues. He had developed several skin pressure ulcers. He looked exhausted, he winced in pain. He was constipated and full of frustration. He looked broken and it didn’t take too much to convince him that he needed to be admitted. He needed a general sort-out, especially of his pain. I promised him we would keep him in the inpatient unit for as short a time as possible, and that we would send him home if things improved.

We worked on his pain aggressively and brought it under control fast. His constipation proved to be more stubborn. His skin pressure ulcers responded well to our nursing team’s attention. He hadn’t spent much time apart from his wife and he worried about her when she wasn’t around. He thought she did too much for him and he wanted her to take a break. At the same time, he thought he would miss her too much. They had been together through many hardships and many successes, the highs and lows of a busy intertwined life. Everything had become a struggle in recent weeks because of the loss of mobility. How long could they continue together at home? Would they have to live separately?

Palace of Care – Where There’s a Will

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Photo by Miguel Bruna on Unsplash

Willpower can be like a superpower for some people. Through sheer force of will they can make themselves stand up from their deathbed and walk to the toilet. I’ve witnessed people hold on until the arrival of overseas relatives. People who I can’t explain through physiology how they could still be possibly alive two weeks after they had any oral intake of food or fluid. What hidden reserves do they draw upon to sustain themselves? I don’t know, I can’t explain it with science. There is still much we do not know.

Let the force be with you. Well, it certainly is with some of my patients. The sheer force of determination. Or is it love? Or faith? People can hold on to life despite the worst of circumstances. Viktor E. Frankl and others could survive concentration camps because they had something to continue living for. What if you do not want to live any longer? What if life is full of pain and has become unbearable? What if you spent your whole life in control but have lost control at the end of your life?

I’ve seen many former professional people who had spent their careers in charge of people, struggle when they have lost control. They included school principals, charge nurses, managing directors, coaches and military leaders. They had guided their staff through difficult situations but had trouble guiding themselves through their final situation. The existential distress of dying caused them much suffering. Some of them would’ve requested an assisted death if it had been available to them. Some people will try their hardest to die and may wake up disappointed each morning they survive.

I’ve watched feeling powerless as people put as much effort as possible into dying naturally. They willed themselves to stop living and expended many hours in distress when it didn’t work. As in the rest of their lives when they wanted to achieve something they had pushed as hard as they could. Striving with the full force of their will to grab onto something that would take them away. Losing their last shreds of patience and sometimes shaking their faith, they kept trying harder and harder, beyond exhaustion.

Until.
They.
Finally.
Let.
Go.

Other people, like my patient from Europe, could let themselves go. They may have said their goodbyes to the people they needed to. They might have had one last family reunion or spent one last night with their loved ones. They did what they needed to, finished their business, and then relaxed and let themselves drift away. To sleep perchance to dream.

Palace of Care – Alien State

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Photo by ennif pendahl on Unsplash

He had always been active. Busy at work, busy at home. He and his brother had emigrated from Europe over 50 years ago. They came to seek a new life in New Zealand. They both married local women and raised families. Both of them had remained active in their elderly years, especially our patient. He spent a lot of time in his garden when he wasn’t playing soccer with his grandchildren. He did not handle being sick well.

The constant fatigue troubled him the most. Not being able to do what he loved. It was as if the weeds could tell they were safer with him less active. They quickly took over the garden. His lawn had dandelions growing in it for the first time, they usually did not survive long enough to flower. The lawn was where he would play soccer with the grandkids. He wasn’t able to play any more and the ball would’ve been slowed down by the wild chaotic weeds. He could not get used to his new situation – inactivity.

He hated being unable to do what he wanted. Being forced to sit down after the shortest of walks made him feel useless. The indignity of having to be pushed around in a wheelchair was the worst. He thought everyone was staring at the old man in the wheelchair. Old and frail was how he felt, words he thought would never be associated with him. He didn’t want to live if he couldn’t be independent. Back in Europe, he would not have to go through this torment. If he was a citizen there he could request assisted dying, but New Zealand’s law change was still many years away.

The hospice staff had given him more bad news. They thought he was too frail to live at home. It was recommended that he be admitted into residential care. Away from his wife and his house. Living with a whole bunch of elderly strangers to him meant a severe loss of privacy. It would also cost a lot of his hard-earned money. All the sacrifices he had made to save money, buy his house, raise his children, and spoil his grandchildren. Cheese and onion sandwiches for lunch every day at work for forty years. He could not take it any longer. He had always been what he called determined, and what his wife and brother called stubborn. He knew what he had to do before things got even worse. His family would understand. Eventually.